Living a long and happy life in spite of having ALS/Lou Gehrig's disease

Month: August 2017

Mirror, mirror on the wall. Can I pass for normal, at all? Most of us grow up with a sense of what it means to be normal, to be accepted in society. We attend school, and are taught to behave a certain way. We want to be liked by others and to fit in. I was lucky enough to have friends who, like me, liked to think outside the box. All of those stares I received in my younger years due to my not so normal hairstyles and clothing choices, helped prepare me for the stares I would receive later in life, post ALS. Using a walker or wheelchair is a sure way to get a second glance out of nearly everyone. Add to that a leg brace, a neck brace, or ventilator, or whatever you happen to need to carry on, and soon you have the entire world (or so it seems) staring and wondering what the heck is wrong with you. You might need to adjust your sense of normal, or just forget about trying to fit the normal mold altogether. When you are no longer doing your own hair, your voice sounds different, and nothing seems to fit right on your sunken in shoulders and chubby stomach, (all common if you have ALS) it can make you feel like you don’t look quite like your previously normal self. And, you probably don’t. But, so what? And after all, what does it mean to be normal anyway? Is being married for 31 years normal? Is being happy almost everyday, even though you’re living with a terminal illness (and isn’t everyone technically terminal anyway) normal? Probably not. So, it seems like maybe I’m just destined to fall into the Abby Normal (Young Frankenstein fans) category. And, it does secretly make me feel better when I am out and about and notice people I know who look quite bad, even though there’s no reason they couldn’t have combed their hair and put on a clean shirt before they went out to dinner. I know that’s really horrible of me, but if my hair looks terrible, it’s because I can’t use my arms and rely on my husband to style my hair. If their hair is a mess, it’s more than likely because they just don’t care. And why am I so concerned about how I look anyway, you might ask? I know, it seems like I might have much more to worry about, but I feel like I should have little cards made that I can pass out (I don’t know how …you know with the whole non working arms problem) that say something like, “Please know that my wonderful husband has helped me get dressed and fix my hair because I have ALS and can’t do it myself. If I could, I would be wearing matching, stylish, well fitting clothes, have my hair styled and makeup on. Fortunately for me, my husband thinks I always look great. Unfortunately, like most husbands, he is often wrong. LOL ”

I try to remember, and take, my daughters advice. She always says, you are never going to see any of these people again, so don’t worry about what you look like. She is usually right. Although, sometimes I think she says that to get out of doing my hair or makeup! I sometimes go for weeks without ever even looking in a mirror, and it’s amazing how when you don’t know if your hair is a mess, or if you might look better with a little make up on how much better you feel about yourself. If I don’t know about the spinach in my teeth, I can’t worry about smiling and someone noticing it. Right? That being said, if that ever happens, please just tell me, “Hey, you need to floss”! Life is too short to worry about anything, and in the grand scheme of things, if you are happy that’s all that really matters, right?

Sometimes sleep can be elusive, especially if you are dealing with a serious illness. These days it seems like almost everyone has trouble sleeping . Just look at all of the TV commercials for mattresses to help you sleep, There are adjustable mattresses that separately adjust the firmness of the mattress and even raise and lower at the top and bottom of the mattress, allowing both people using the bed to customize for their own comfort. I am starting to think Rob and Laura Petrie had the right idea with separate twin beds. It’s hard enough to find a bed, mattress, pillow and blanket combination that works for one person, let alone two people! Remember Goldilocks? She tried out three different beds before she found one she felt comfortable using. Even the size of beds has changed over the years as people sought out a more restful nights sleep. A, somewhat small, double size was the standard for years. Then came the Queen, the King, and the ultimate, California King.

I was hospitalized for a few days after surgery for a kidney stone, and the bed I had was amazingly comfortable. Of course it was fully adjustable, and the mattress constantly shifted with inflating and deflating air. It was like sleeping on a cloud.

Sometimes, no matter how much size and comfort you squeeze into a bed,when you don’t feel well, or have trouble sleeping, sleeping alone is your best bet. I would say that people who have ALS make the best bed mates. We can’t toss and turn all night, and can’t steal the covers. The only drawback is, if you toss and turn and steal our covers, you will be up all night constantly readjusting our blankets and body parts when you accidentally move them. So far, my husband and I have made do with our queen sized bed using a memory foam mattress and separate blankets. The memory foam mattress reduces (somewhat) movement from his tossing and turning. The separate blankets are a big help. We should have tried that years ago. I don’t have to worry about my covers moving every time he moves, and we each decide how many or few blankets we are comfortable using.Experiment to find what works best for you, and don’t be apprehensive to go it alone. You may have the best nights sleep you’ve had yet.

Crank it up! Music has the ability to lift your mood like nothing else, except maybe those cute kitten Youtube videos. It can transport you into the past, to a time when you felt happiness, love, friendship, sadness (just skip those songs), etcetera. Play some old tunes from your high school years, and I guarantee you’ll instantly tap your foot and sing along! Once I learn the lyrics to a song, they seem to be permanently etched into my brain, unlike all those facts I spent so many hours trying to memorize in school.

I think I got my love of music from my grandmother because she loved to listen to everything under the sun, and I do too. I don’t fit into the target audience for Katy Perry or Awolnation, but I love their music. My kids are probably just happy I couldn’t drive them anywhere and embarrass them with my music selections. Although, I don’t always enjoy the music they choose either. I remember one day sitting on the porch supervising my daughter doing yard work and I wondered how many people drove by and didn’t see her crouched down beside the car pulling weeds, and just saw me, heard her music, and thought I was the one jammin’ out to ,”You’re A Douche Bag”.

Live music is the best. There really is nothing like a concert to make you forget about everything except the music you are listening to. Singer/songwriter Michael Franti and his wife, Sara, know how much music can affect people in a positive way, and they created a foundation called, http://www.doitforthelove.org which gives concert tickets to anyone who is living with a serious illness. Depending on the musician and their schedule, sometimes they can arrange for a “meet and greet” with the musician, as well as free concert tickets. If you are able to donate to their foundation, do it! I went to an awesome concert to see John Mellencamp last year, thanks to “Do It For The Love ” foundation. I try catch a concert or two every summer. This summer, I’ll see Alice Cooper, ZZ Top, and Arlo Guthrie.

Whenever you are feeling down, give it a try. Listening to your favorite songs or finding new music is so easy now, no CD (or album or 8 track or cassette tape, depending on your age) purchase required, Thanks to internet sites like Amazon Music, or Spotify (or many others), Just type in the name of your favorite artist or song,
and let the musical healing begin!

I got to see my rockstar urologist, Dr James Lingamen, this week. In the world of urology, he is Mick Jagger. For approximately the price of a concert ticket, I get a private meet and greet with him every year, also known as my yearly check up. I didn’t know anything about him three years ago when I picked his name out of a long list of urologists approved by my insurance company. I didn’t know that people travel from all over the country, and even from other countries to be treated by him. He was not my first choice by the way, but the Universe/God made sure I ended up with the best urology surgeon in the U.S., or so I was told by every person who saw his name on my hospital paperwork. He informed me that my golf ball sized kidney stone, and smaller stones would have to be removed surgically because they were causing infection throughout my body., and that you actually could die from a kidney stone (or rather, the infection it causes). Even though I couldn’t move an inch on my own, and had an FVC so low that I could not be put under using anesthesia, and could not lie down flat (for a surgery usually performed with the patient lying on their stomach), Dr. Lingamen said he had performed this surgery on difficult cases before with patients using a local (patient awake). He seemed to think it would be no problem whatsoever. What he was actually thinking, I don’t know, but he made me feel like it was no big deal. I got the feeling, later on after hearing comments made by others involved with the surgery, that it was indeed, quite a big deal. I went in for surgery and found out it would have to be delayed a month due to the amount of infection throughout my system. A stint was put in (a dreadfully unpleasant procedure) and I was given a month of strong antibiotics. Fast forward to around a month or so later, and after two days and two surgeries, all my stones on the right side were gone. I don’t recommend having surgery under a local and wide awake, but if that’s your only option, it’s doable. Luckily, during my surgeries there was so much going on all at once and so many people talking, that it was hard to concentrate on any one thing, and the hours flew by. I could definitely tell that the people in the room were used to the person on the operating table being asleep, it seemed like my feet and legs were constantly being bumped into, as if I were just a piece of furniture. But the most important people, my surgeon and anesthesiologist, were very aware that I was awake. They even cranked up the heat for me in the very cold operating room. I was placed in the pulmonary wing for recovery, due to ALS related breathing issues. Except for a couple of bad eggs, I had the most awesome nurses who worked so hard and were such a huge help. My bed was amazingly comfortable. I wish I had the same self adjusting mattress at home. I ended up with a small private room, which meant quiet and I could set the heat on whatever I wanted. My favorite nurse even brought in a roll away cot so my husband could stay with me the entire time, which he did by the way, for four days with very little break.

After four days, I went home. I really wouldn’t want to do it all again, but I did it! And now I have a great story I can tell, although I rarely bring it up in conversation. Usually it’s my husband who recounts the story of my courageous surgery. This week, before I talked to my doctor, I met with a Fellow working with him. As we talked about my surgery, he said he wished he could take me around to talk with some of the whining patients who need simpler procedures but complain about how hard it will be for them and how long it will take. I think my lack of complaining about it all and what some people would view as brave or courageous simply comes from having no other choice. When you know you only have one option, the choice is easy to make. As with ALS, when the doctor says you have no options, you have no choice but to just keep going the best you can, for as long as you can. You may not feel particularly strong, but that’s how you end up being viewed by others. When something minor happens, I think we all complain a little too much sometimes. But when it comes to the big stuff, most of us are stronger than we feel, and braver than we think.

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